Motor Neurone Disease (MND)

Derek - Interview 27

Age at interview: 73
Age at diagnosis: 68

Brief outline: Derek was diagnosed 5-6 years ago (2001 or 2002). His arms and legs are affected but he is still able to walk unaided round the house. Finds his memory for words is being affected.

Background: Derek is a retired general manager, married, with 6 adult children. Ethnic background/nationality' White British.

Audio & video

Derek first noticed something was wrong about 6 years ago when he started to get muscle twitching in his legs. On one occasion when playing in a golf tournament, he went to hit the ball and fell over. His GP referred him to a neurologist, and within a few weeks he was diagnosed with Motor Neurone Disease. His wife was with him when they were told the diagnosis, and they were both shocked and tearful. Until then he thought it was probably just signs of old age or arthritis.

At the time Derek felt the information was too negative and would have liked to be told more about the fact that different people are affected differently and that some live longer than others. He used to feel he had no future, but as time has gone by, he has started planning ahead again. Now he deals with the condition by putting it to the back of his mind whenever he can and enjoying life as much as possible. It is frustrating not being able to do simple things he used to do, but he can still drive and has an electric wheelchair to get around the village independently. His wife helps with tasks like washing and dressing, and they have a strong relationship together. Their children and grandchildren have also been very supportive and have arranged big family holidays abroad, which he has really enjoyed.

One effect of the condition which troubles Derek is pain in his legs, for which his GP prescribes strong painkillers. He takes riluzole, which his GP negotiated for him. He is also a diabetic, so he has to manage his blood sugar level carefully. Another symptom he has started to notice is that he finds it harder to remember specific words when he is talking or doing the crossword. 

He and his wife tend not to go to support group meetings, partly because they find it sad to see other people with the condition getting worse over time. They draw support mainly from each other and their family. They have a good GP who provides most of the care they need, and they have had some adaptations made at home. However, Derek feels sometimes staff have provided too much equipment that he does not want or need, and he worries this is a waste of resources that other people might need more than him.

He supports other people's right to choose to end their life, but he personally would never consider it. His message to other people with MND is not to think about it too much - to 'let it all happen and fight it as it comes.'


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